Autism. The word still echoes in my ears, so loudly it’s almost deafening. How could we wrap our heads around the fact that our older daughter, Maëlle, who was only two at the time, had a life-changing condition that the medical community is only now beginning to understand, a full 15 years later.
For months, I couldn’t even say it out loud. I wanted to stifle it, as I silently endured the symptoms of my child’s distress – her uncontrollable outbursts, her sleeplessness, her resistance to being touched or held, her inability to understand our words of affection let alone utter any of them back to us – even the simplest “I love you.” Deep within me, all I could see was the long road ahead to build a life for someone who seemed so far removed.
Maëlle was my Mount Everest. Thus began the ascent, with a series of occupational therapy, intensive behavioural therapy and speech therapy sessions, interspersed with appointments with the child psychiatrist, the neurologist and so many others. Until I reached the top of the mountain, I wouldn’t stop. And one day, just as I was telling Maëlle how much we loved her and how proud we were of her progress, the winds of rage and fury that swirled around us were swept away by silence – the kind of calm that only comes after a storm. Our daughter seemed increasingly aware of our presence. She started to come out of “her world,” telling us she loved us and asking us for a hug.
I don’t think I’ll ever forget that first “I love you” that brought Maëlle toward an awareness of the fragility of life that she continues to honour today. Soon to be 17, our “big little girl” is already starting to talk about what will happen “after” Sainte-Justine, once she is a “grownup.”
The concept is abstract for her, as it probably is for many autistic and neurotypical youth of her age as they approach their 18th birthday and consider the next step in their academic path. Once again, we will have to set out sights on another peak and map out another route, ready to navigate all the obstacles that come with it, so that Maëlle can receive the care and services she needs, most of which will no longer be available to her through the healthcare system once she turns 21.
That’s just the way it is, unfortunately. As parents of a person you may see as different, but who shines ever so brightly when she sings a song she wrote, howls in laughter with her service dog, Fluffy, or talks about the future: protecting the environment and caring for older people, we – her parents, her brother and sister, her grandparents, her aunts and uncles, her friends and her caregivers – will always be by her side to help her scale to the top of Mount Everest for all of us.
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.